My neurologist and I make all sorts of adjustments. We go down on one culprit with particularly distasteful repercussions until my walking worsens. Then it’s time to regroup. We add meds to address side effects, which in turn make their own statements. Understand, I’m an impatient person who rarely acts incrementally. I embrace BIG CHANGE. Not with my pills. The process of going up and down, not to mention trying new meds, is E-X-C-R-U-C-I-A-T-I-N-G-L-Y S-L-O-W. But I appreciate the need to drive with caution and intermittently engage the brake.

The “games” never end. I had to discontinue a long-standing drug that caused my blood count to plummet dangerously. Another regular exerts undue influence on my blood labs, rendering them confounding to everyone except my neuro. Then there’s the trial and error of “new” treatments. During a clinical study, I became convinced a med was making my Dystonia worse and hightailed my way off that highway. I speak from experience when I say serious drugs merit serious vigilance.

I reap the benefits of a highly knowledgeable and careful neurologist. However, responsible health care doesn’t end with a trustworthy physician. As patients, we’re the ultimate arbiters of the substances we ingest and interjecting a healthy dose of caution is prudent. Do the research, investigate your options, read the fine print, ask probing questions, and trust your instincts when it comes to side effects – after all, you know your body best.

With World Health celebrated throughout spring and summer, the American Recall Center has embarked on a campaign to promote medication safety (check out their tips below). The American Recall Center website is an invaluable resource for prescription drug and medical device recall information and other healthcare topics advancing informed medical decisions.

12 responses to “The Medical Sideshow”

Have you thought about Deep Brain Stimulation? I may have asked you before, but can’t remember. I will hopefully be having the surgery in September! Very exciting and nerve racking at the same time. Best wishes to you and God Bless!

Jessica, I actually have considered DBS and met with a neurosurgeon in New York City several years ago. At the time, I determined to continue with my medication regimen. As my dystonia worsened over the past two years (from fiddling with my meds), DBS came back on the radar but for now I’m staying put. However, I do know the surgery has been extremely helpful for a number of people living with dystonia and I wish you the best of luck. xxx -Pamela-

I believe it is DYT6. I haven’t looked at my test results in many years. They don’t consider mine childhood onset, but mine started with writer’s cramp at 15. At age 21, I lost my voice (Adductor Spasmodic Dysphonia), and was getting more symptoms throughout my arms and legs that were worsening at a pretty good pace. The Adductor Spasmodic Dysphonia led doctors to look into Dystonia as a diagnosis, and I was tested. I started Botox injections in my throat for the Dysphonia and got my voice back at age 23. I couldn’t handle medications for the Dystonia, as they were making me sleep at every moment available (ie, breaks at work, lunch break, going to bed as soon as I got home from work). I couldn’t funtion on a day to day basis because I couldn’t remember what someone said to me or vice versa after about 2 minutes and couldn’t hold on a conversation more than about 2 minutes without being completely lost. I also tried Botox injections throughout my arms and legs, but it was excrutiatingly painful for me and I was either too weak in some areas or it didn’t help at all in others. I was told about 7 years ago that I wasn’t a candidate, which made no sense as I read alot about it and how much it helps people who have it genetically; but I trusted the doctor, after all, he is a specialist and should know better! I am 31 now. Last year I had my 2nd son, my oldest is 8. My oldest has missed out a ton with me, and it’s always been heavy on my heart, but having another child and having to have my parents help me raise him (my husband and I divorced after I got pregnant) just breaks my heart. About 3 months ago a man, a stranger, came to me and asked if he could pray with me. I was sitting in my car, so I just thought he needed someone to pray with. He ended up praying for me to be healed. I have been prayed for many times throughtout all this, and it has never “worked”, but this time had me completely broken, just overwhelmingly broken. I was on my lunch break at the time, so I went back to work and immediately started searching for nuerosurgeons to get a second opinion. Turns out God was working through that man, to push me to look for answers again, as I had given up 7 years ago when my doctor told me that I wasn’t a candidate. It also turns out that up until 1 year ago, you had to disclose to your insurance company all your treatments and their result and they would decide if you could have surgery. Now, however, they cannot deny this surgery to Dystonia patients anymore! I didn’t know this until I saw the doctor, but that just means I can have the surgery sooner because I don’t have to wait for other people to decide my fate!

I’m sorry I have rambled on about my life, but I love sharing my story. I feel like it reaches people in many ways and encourages them in many ways as well. I say if you are tired of struggling with your treatment options, DBS is definitely the way to go. It takes about a year sometimes to get optimum results, but for me it’s worth it much more because it is a permanent treatment if it works. If it doesn’t work for you, you just take everything out and go back to trying the meds and such.

Jessica, Thank you so much for sharing your story, that is what this website is all about. You’ve certainly had quite the journey and I truly wish you the best. As for me, still fiddling with my meds but DBS continues to lurk in the corners of my mind, who knows what the future has in store. xxx -Pamela-

Thank you for sharing your stories with us and giving the comfort that we are not alone, and that we can almost always find some humor in our problems. Being able to laugh about things that have happened to me has definitely changed my perspective of this nasty disorder. I wish I could do what you do! Love always!

Highlights from the Bronx Zoo Walk on Oct. 4, 2015

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Email: ps@dystoniamuse.com

What seems like a lifelong experience with Dystonia began with a "mis-step" when I was 8-1/2. Dystonia may have staged a coup over certain body parts but my heart and soul remain firmly my own. I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health activist.